Hi jmardis,Welcome to Lymenet.
I'm sure WildCondor has given you some expert advice. She has a wealth of knowledge about Lyme Disease & a phenomenal website.
You've certainly come to the right place for answers.
We will try our very best to provide the latest information about Lyme Disease enabling you to make informed decisions about your health.
Sorry to hear you've been having such a rough time.
While only a physician can diagnose you with Lyme Disease, we are glad to share our experiences with you.
You have a small window of opportunity to treat Lyme Disease successfully, if you catch it fast.
I hope you will make it a top priority to find a Lyme Literate Medical Doctor for evaluation and possible treatment. To delay is really gambling with your future.
Naturally, half the battle is getting the correct diagnosis. The real key is to get a high enough dose of antibiotics for an extended period of time.
Unfortunately, ten days or 4 weeks of antibiotics is not long enough to eradicate this disease.
The length of treatment depends entirely on the patient's own unique situation.
If that rash (Lyme rashes can look different than the classic bull's eye rash) was indeed caused by a tick, you have Lyme Disease.
The classic bull's eye rash is diagnostic for Lyme. Try to get a disposable camera & take several pictures of any rashes using a coin to show size comparison. Secure the photos for safekeeping.
Less than 50% of Lyme patients report seeing a Bull's eye rash----yet you can have LD without having a rash.
By the way, do not let any Doctor give you steroids because this will further depress the immune system & allow the Lyme to flourish.
Lyme can do whatever it wants in the body and coupled with the fact that every patient presents with a myriad of symptoms, it makes treating Lyme Disease (LD) very complex.
Lyme Disease is called the ``new great imitator.'' Few LD cases are ``textbook'' cases. That's what makes it so difficult to diagnose if your physician does not have expertise in tick borne diseases.
Lyme disease is a clinical diagnosis based on symptoms.
Testing is done merely to support the diagnosis and to satisfy insurance requirements.
Many Lyme Literate Medical Doctors (LLMDs) prefer using a specialty lab such as IGENEX in California for testing.
Eventually they will usually run the Western Blot IgM and IgG tests. (The ELISA test is deemed useless.)
Each LLMD has his own protocol for testing. Some opt to give 5 to 10 days of an antibiotic like Zithromax prior to testing to elicit a positive test result. It really depends on your LLMD.
The antibiotics (ABX) help pull the Lyme bacteria out of the tissues where it hides, so it will show up in the blood yielding a positive Western Blot lab test.
It's interesting to note that a patient can have a negative Lyme test, but have a raging infection. Some of the sickest patients have negative tests.
Not to be forgotten are the all-important tick borne co-infections that ticks carry such as: Babesiosis, Erlichiosis, Bartonella, Mycoplasmas, and more.
Your LLMD will also want to check you for these infections, although it's difficult to distinguish among the co-infections as their symptoms overlap greatly with those of Lyme Disease.
Many patients have to travel long distances to find proper medical care. As you will see, there are very few LLMDS.
Here are 3 ways to find one:
1. Go to Seeking a Doctor. Post a request & someone from your area will e-mail you privately with a referral.
Sorry, but we're not allowed to post physicians' names on the board without their permission.
2. Go to Support Group. See if there is a support group from your state. Contact them via e-mail.
3. Click on the logo for Lyme Disease Association. Next, click on Doctor Referral in black column. You can call them or e-mail them.
If you still have trouble finding an LLMD, please let us know.
A great place to start reading about Lyme Disease is ``Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses.''
This is the most important, comprehensive handbook for Lyme Disease. Most folks like to print this out for easy reference. It has a symptom list and recommended medications.
Just click on this site:
http://www.ilads.org/burrascano_1102.html
Another favorite of mine is called ``Lyme Disease and Associated Diseases: The Basics.'' It's a 28-page, plain-language introduction to tick-borne diseases.
It contains a 7-page comprehensive symptom list which I know you will find fascinating.
Click on: http://www.lymepa.org to download entire printout. When you reach the site, click on the Booklet icon located below the Lyme Teens icon.
Lymenet has a special site for new members called Newbie Help Links. It's a goldmine of information designed to simplify research about LD.
Click on: http://flash.lymenet.org/ubb/Forum1/HTML/029917.html
The more you know about Lyme, the more you can take charge of your health.
Naturally, this is a lot of material to take in at once, but I do hope you can print out the Diagnostic Hints & Guidelines, as well as the The Basics booklet and read them later.
You deserve to know with certainty if you have Lyme Disease as it is a potentially debilitating disease if left untreated or if it is undertreated.
If it turns out you do have Lyme Disease, remember the clock is ticking. You just can't hesitate seeking treatment when it comes to fighting this clever bug.
Most of all, we just want you to find the root cause of your health problems. So please keep asking questions as we understand firsthand how overwhelming this quest can be.
Lyme Disease ------it's not what you think it is!
Best Wishes,
Jan
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